From Chance to Choice: Genetics and Justice

Features

• Cover Type: Paperback with 412 pages
• Published by: Cambridge University Press November 12, 2001
• Written in: English
• ISBN 10 Number: 0521669774
• ISBN 13 Number: 978-0521669771
• Book Dimensions: 9 x 6 x 0.9 inches
• Weighs: 1.1 pounds

From Library Journal
There has been some reluctance in this country, based on the horrific consequences of past eugenics movements, to consider fully the societal impact of recent and future genetic investigations. The authors (professors of philosophy and medical ethics) attempt to develop a moral framework for the theoretical issues relating to genetic interventions. The book aptly illustrates the complexities of these concerns, exploring current ethical theories to determine if they can adequately address these tough issues. Equal opportunity, distributive justice, inclusion, and reproductive freedom are discussed in depth in an analysis of how these concepts relate to genetic technologies. While the authors freely admit that they do not have all the answers, they do conclude with some broad recommendations, particularly regarding the role of the state in genetic policymaking. Prior knowledge of philosophical theories will be helpful for readers of this scholarly work. Recommended for upper-level and graduate research collections.
-Tina Neville, Univ. of South Florida at St. Petersburg Lib.
Copyright 2000 Reed Business Information, Inc. --This text refers to an out of print or unavailable edition of this title.

From The New England Journal of Medicine
Just when President Clinton has joined other world leaders to announce the completion of the first draft of the human genome, four philosophers have stepped forward to perform an "ethical autopsy" of eugenics, in which they explore the implications of eugenic theory for new genetic interventions. As its title suggests, From Chance to Choice: Genetics and Justice is a benchmark treatise. It is captivatingly succinct and complex, and its authors grasp the fundamental issues of justice, fairness, and equality that exist in eugenics, just beneath the glitzy research and "big science" used to map the human genome. As the authors note with remarkable harmony, the events surrounding the Human Genome Project provide outstanding reasons for rethinking modern moral and social philosophy. The authors, all professors of philosophy at distinguished universities, provide for the world a succinct and concise statement of the questions that will confront society as genetic techniques and interventions become commonplace in the years ahead.

In their groundbreaking attempt to apply their collective wisdom to these issues, the authors engage in a critical analysis of eugenics, which they accurately characterize as the first attempt to use scientific knowledge about heredity to improve human lives. Although they criticize eugenics as shoddy science, rife with blatant class-based and racial bias, they also courageously describe the eugenic underpinnings of the relation between future genetic interventions and justice. Acknowledging, without endorsing, the inescapable influence of eugenic philosophies on applied genetics, the authors meticulously catalogue complex but inevitable issues of justice, fairness, and equality that will arise in the 21st century.

What does it mean when society views a trait as desirable? Does that make the trait good? Which traits trump others? Does medicine look only for disease, or does it also look for desirable traits? If so, which desirable traits are more important than others?

The authors set forth some fundamental working assumptions: no one knows the limits of genetic knowledge, and ethics should guide social practice. However, there is no clearly superior framework to guide ethical practice concerning genetic interventions and other applications of knowledge from the Human Genome Project in the decades ahead. The authors clearly state that the theoretical antecedent for current research, eugenic theory, foundered because it confused the prevention of disease with the prevention of lives that might have meant disease. This resulted in laws and social policies that favored the sterilization (or, in the notorious Nazi applications of eugenics, death) of so-called undesirable populations, laws that were rooted in faulty judgments about what kinds of people should be born. The authors also correctly note that eugenicists confused bourgeois values with biology in a manner that was not founded in scientific fact but that instead, perhaps inadvertently, validated the self-image of the upper classes.

Criticizing Rawls and Dworkin to express their own view on whether fairness is a question of distribution, a fundamental value, or a social goal, the authors describe the goal of "equal opportunity" as an avenue toward entitlement and toward limitation of access to genetic interventions and services. From the authors' collective standpoint, issues of justice are a distribution problem, with some benefits available to each human being and, inevitably, not all benefits constantly or simultaneously available to everyone. The authors hint at the potential impact of this problem, stating that genetic therapies and other choices will confront us and that "we will be tempted to medicalize what we have hitherto considered normal." The line between health and disease will be redrawn by society.

Yet, rather than explore the influence of precursors of contemporary philosophical norms and social values, the authors limit their discussion of genetic justice to distribution and economics. They acknowledge, but do not fully grapple with, the questions of social value that confound any discussion of the distributive view of justice and thus hint at a societal influence, asking whether the desirability of a treatment makes it necessary (as in the case of psychiatric counseling for the spouse of a human being who has a mental illness, in order to save the marriage), but their analysis does not go far enough. It would have been particularly useful if they had offered more discussion of underlying social values as a distributor of equal opportunity and justice. Such an analysis would have been invaluable for understanding the examples they provide from contemporary medical care and for future practice.

Amazingly, the authors approach this millennial philosophical issue without losing humanity. Their collective style of writing is a joy to read, and their work reads more like poetry than philosophy. Like poetry, too, their words are worth returning to several times, to unearth intentionally embedded subtext with enhanced meaning. Their book will be cited often.

Ilise Feitshans, J.D., Sc.M.
Copyright © 2000 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS. --This text refers to an out of print or unavailable edition of this title.

Reader Reviews
This review is from: From Chance to Choice: Genetics and Justice (Hardcover) I would like to suggest that this book is a landmark in the intellectual history of the human race on a par with Rousseau's Social Contract and Darwin's Origin of the Species. This book is a great achievement for the authors (a "dream team" of practicing bioethicists). I had just enough training in ethics (B.A. Michigan 1982) to understand the book and I enjoyed it immensely. I wonder, however, whether this book would probably be inaccessible to many readers who should read it. I expect we will need a really thorough set of "Cliff Notes" (or "Genomic Ethics for Dummies"), since this book seems designed to be read by the modern ethical philosopher, moreso than the educated members of the public. Perhaps the reviewers on Amazon.com could provide such a service for the world. I was fortunate to have an advance peek at the book through a conference held in San Diego in January, so I have had some time to reflect on the book's implications. This book made me intrigued about the prospect for some people using the genome to have better babies (see the book on Designer Babies by Dr. Gosden for the "how to" on in vitro fertilization). Under secular ethical principles, as outlined in this book, do parents have an ethical obligation to use genomic information to have a "healthier" child? If so, what are the ethical boundaries of that obligation? NPR had a report some time ago about some achondroplastic dwarf parents who wanted to choose a child with their genetic "defect" --- is that sometime ethically prohibited by the principles in this book? The parental choice issues raised by this book strike me as the issue ripe for controversy. These are the fundamental questions that this book raises for every member of the human race who plans to procreate (or already has procreated). My kids will be entering the first generation where prospects for improving admission to the aristocracy (e.g. to an Ivy League school) arguably could begin at the moment of conception (if in vitro, aided by genomic data to screen embryoes). I find that interesting and a little bit alarming. Chance to Choice also addresses myriad ethical issues (those relating to "distributive justice" in the mode of John Rawls' Theory of Justice) that will spin off from the genome project. They suggest that genetic discrimination (the "genetic ghetto") may arise if we are not careful about how this information is used. For anyone planning to make a living from the genome, some understanding of this book is essential to their success in business (I am an attorney involved in biotech issues and I think that this book point to (but does not map out) the boundaries of what companies can do with the genome). My EMail is tredick@chapinlaw.com if anyone interested in discussing this book's implications further. I think that people will be talking about this one until the talking, bipedal genetically enhanced, vegetarian activist cows come home sometime in the next hundred years (just kidding... ;). I plan to buy some extra copies on Amazon.com to give away or mark up with highlighters (those parts I need to read many times to really understand). It really is a great and timely book. Tom